Article in newspaper
23 September 2023Jaimee and I had a follow-up interview with Hawke's Bay Today.
Below is the link to the article.
0 comments
|
Login to leave a comment
....a CHANCE to LIVE is all Jaimee wants.... please help us fund for critical medical treatment not available in NZ
-
-
SMAS and MALS part 4.
17 September 2023The peristalsis is the motor function of the bowel and stomach. It needs to be slow enough to give the bowel time to absorb nutrients and it needs to be fast enough to transport digested food towards the anus. If the peristalsis is too slow, the stomach remains full, often many hours after a meal and dilates progressively. Sometimes such a development is described as gastroparesis. The stomach enlarges and not rarely extends down into the pelvis.
One example for a disturbed innervation of stomach and duodenum is the median arcuate ligament syndrome 💙 (MALS). The pressure of the arcuate ligament onto the nervous plexus surrounding the coeliac artery, the coeliac plexus aka solar plexus, disturbs the normal activity of this important vegetative nervous network. The normal function of the coeliac plexus consists among others to orchestrate the timely action of food uptake, secretion of digestive fluids and enzymes and a useful, propulsive peristalsis.
In MALS a weak peristalsis may occur due to the mechanical damage of the coeliac plexus. The often long-lasting pressure of the ligament onto the nervous plexus produces an irritation in its beginning and a loss of function due to scarring after years of persisting pressure. Thus, diarrhoea may occur in early phases as a sign of irritation with an accelerated peristalsis. Later due to scarring a slow or lacking peristalsis may become the leading complaint. This is felt as bloating and constipation.
0 comments | Login to leave a comment -
SMAS and MALS part 3.
17 September 2023The forward transport may become disturbed due to mechanical or intrinsically muscular or neural disorders of the stomach and the upper intestines
A very important mechanical obstacle is the compression of the duodenum by the aorta which pushes the horizontal part of the duodenum against the superior mesenteric artery. This disorder is known as Wilkie syndrome 💜 (SMAS)
0 comments | Login to leave a comment -
SMAS and MALS part 2.
17 September 2023The following are excerpts from articles written by Prof Scholbach regarding Wilkies and MALS.
Many patients with vascular compression syndromes suffer from early satiety and cannot eat enough to maintain their normal body weight.
Vomiting is a so-called retro-peristalsis. Normally, the peristalsis propels the food from the mouth towards the anus. If the sequence of the timely coordinated contraction of subsequent segments of the intestines is disturbed, retro-peristalsis may be a consequence. In such a situation deeper segments of the intestines may contract not after the contraction of the upper parts but simultaneously. This builds up an enormous pressure inside the upper parts of the intestines which flushes back food towards the stomach, the esophagus and finally to the mouth-vomiting occurs..
0 comments | Login to leave a comment -
SMAS and MALS part 1.
17 September 2023Here is a little information about two of the abdominal vascular compression syndromes Jaimee was diagnosed with.
💜 1. Wilkie syndrome, also known as superior mesenteric artery syndrome (SMAS). This is a compression of the third part of the duodenum, small bowel between two arteries, the aorta and the superior mesenteric artery. It causes either a partial or complete obstruction of the duodenum.
Jaimee had a complete obstruction and even though it was successfully decompressed, the post surgery functional ultrasound unfortunately showed that her duodenum is not working. This means that eating and drinking will still be an issue until we figure out why it's not working.
💙 2. Median arcuate ligament syndrome (MALS). This is when the celiac trunk and the celiac plexus nerves are compressed by the median arcuate ligament. The celiac trunk is a major artery that supplies blood to the stomach, spleen, liver, gallbladder, and pancreas. It is the first branch of the abdominal aorta located near the diaphragm.
0 comments | Login to leave a comment -
Ten weeks post surgery
30 August 2023I feel so blessed that I was able to take Jaimee to Germany to have this life saving surgery for multiple AVCS & this wouldn't have happened if it wasn't for all those who so generously donated & sent heartwarming messages of encouragement, love & prayers, & also for the support & knowledge given to me from two amazing mums Zalie and Rachel who have been strong advocates in spreading awareness about abdominal vascular compressions due to their personal experiences with their own daughters who had the same surgery prior to Jaimee.
10 weeks ago Jaimee started her new beginning, & even though it was her Ehlers Danlos Syndrome EDS that caused her to develop these compressions, I view these compressions as the centerpiece, I guess because to give Jaimee a chance to live they required her to have major life saving surgery. The surgery was successful in decompressing these compressions & improving the majority of her venous volume blood flow but there were a few major things that the surgery couldn't help with. We have come away with increased knowledge regarding these along with imaging that confirms the problem areas & even though the recovery so far has been pretty hard making it difficult to remember at times that it's measured in months not weeks, we can now start peeling back the layers of all the overlapping symptoms of other disorders that are associated with EDS that Jaimee has (like peeling the layers from an onion) allowing us to finally be able to move forward.
-
Piki te ora, piki te kaha Jaimee. Thanks so much forthe updates. Awesome.
-
-
Thank you
26 July 2023Just wanted to say thank you to everyone for all your lovely messages of love, support, generosity, encouragement and prayers.
-
Wow Jaimee. What a brave journey you have undertaken. You are a true warrior. Our family wishes you a successful recovery and best wishes to your loving family. Lots of love, the Ray family.
-
-
Home 21st July
26 July 2023We are finally home and it's been fantastic sleeping in our own beds.
Something I have been meaning to post for a while, "getting the big picture” post. Now that Jaimee has had this surgery for multiple abdominal vascular compressions (AVCS), does that mean shes arrived home vastly improved? No! Recovery is a journey and is measured in months not weeks, so it may be months before we see a vast improvement. Today marks day 31 post surgery, there have been a number of small positives, and even though it’s not all rosy afterwards, it’s just so so much safer than before!!
However, Jaimee still has Ehlers Danlos Syndrome (EDS) which affects ALL parts of her body, e.g. she will still sublux/dislocate her joints and she has many of its comorbidities. EDS is what caused her to develop multiple AVCS. These syndromes and diseases including AVCS have OVERLAPPING symptoms. This is one of the many reasons why it’s challenging to have multiple vascular compression syndromes along with multisystemic diseases such as EDS and it's comorbidities.
We still do not know if the vomiting of blood and the severe pain associated with it is related in any way to AVCS. Jaimee always vomits up blood while flying, however on all 4 flights home from Germany she didn't vomit up blood once. This is a huge positive.
The months ahead will continue to be a struggle, we were told it would take about 6 to 8 weeks post surgery for the inflammation to settle, today is day 31 post surgery.
0 comments | Login to leave a comment -
Leaving Germany 18th July
26 July 2023So today we are finally leaving Germany to come home, earlier than originally planned.
The past 2 weeks have been pretty tough, but she's been a little better the past couple of days and excited about going home
0 comments | Login to leave a comment -
Day 17 post surgery 29th June
26 July 2023Before being discharged from Clinic Bel Etage everyone who has had the surgery with Prof Sandmann for multiple abdominal vascular compressions needs to have a CT Angiogram scan to confirm all is well.
After several delays Jaimee finially had her CTA and after going over the results with Prof Sandmann which confirmed all compressions have been fixed, she has finally been discharged from Clinic Bel Etage and we have now settled at the Adina Apartment Hotel Dusseldorf.
In the video below Prof Sandmann came and took Jaimee to show her the images from the CTA.
0 comments | Login to leave a comment -
Day 8 post surgery 29th June
26 July 2023The last 5 days have been really rough with a combination of things which is totally expected as recovery is measured in months not weeks.
Day 4 the drains were removed on the left side of her abdomen. Vomiting also restarted, this is perfectly normal so we just need to go with it.
Day 6 Jaimee had the drain removed on the right side of her abdomen. Due to fluid retention there has been a huge increase in swelling/bloatedness which is normal.
Day 7 she vomited up blood. We do know that she is definitely an easy bleeder, that was clear during and after surgery. However we are still hopeful that the vascular compressions have been the main contributing factor to her vomiting up blood for the iast 5 years and especially with what Jaimee refers to as the blood pain. Dr Al-Khayat said because there has been so much trauma to the abdomen from the surgery we need to give it time.
Day 8 today has been quite an emotional day for the both of us. There hasn't been a lot of sleep happening and everything has felt overwhelming. Saying that, Jaimee has actually managed to get to sleep tonight. Let's hope she has a good sleep.
Even though its been rough, overall Jaimee is coping and doing amazingly well.
It is so clear to see how calmer Jaimee has become since she has been in a hospital environment where she is actually being cared for.
-
Kia kaha ra Jaimee. Great to have mum and dad there with you. Piki te ora, piki te kaha ki a koe as you recover. Nga manaakitanga o te runga rawa.
-
-
Day 3 post surgery 24th June
26 July 2023Jaimee is doing amazingly well. The physio came twice today. This morning she sat on the side of the bed and stood up.
She also started to have a few spoonfuls of soft/liquid food. Still having IV nutrition and Fluids.
0 comments | Login to leave a comment -
Day 1 post surgery
23 June 2023Jaimee needed to have a blood transfusion as she was loosing too much blood. They gave her 2 units of packed red blood cells and a bottle of plasma containing the blood clotting factors. They did say the blood loss has slowed down so let's hoping it's better tomorrow.
She is sleeping alot but also waking alot then falling back to sleep. Her blood pressure is doing better. No vomiting, has sat up a couple of times and has had a glass of water. The pain feels like she's been hit by a bus.
-
Ko te amorangi ki mua, ko te hāpai ō ki muri, kia tau iho i ōna manaakitanga ki runga i a koe Jaimee. May the blessings of the Lord Almighty be with you Jaimee. Kia kaha koe!
-
-
Surgery update
21 June 2023My beautiful brave zebra warrior. The surgery went well. There was no bleeding as such but there was oozing red fluid through out her body which required her to have either blood transfusion or more of the plasma, but her haemoglobin is stable.
The MALS compression was so severe and tight it took Professor Sandmann longer to locate it and he needed to do a large resection of the median arcuate ligament as well as having a stent.
3 comments | Login to leave a comment-
Thanks for sharing this update. Glad to hear that the procedure went well and hope the recovery process is manageable and fruitful
-
Bravo! praying for her speedy post-surgery recovery!
-
Kia kaha koe Jaimee. Pleased to hear that the operation went well. Here is wishing for a speedy recovery.
-
-
Surgery
20 June 2023Jaimee was collected from our room for surgery at 7.30am. They are being very thorough in their preparation and due to Jaimees bleeding issue she has been given plasma that contains the different clotting factors. They have also made it clear how painful this surgery is. An epidural is placed before surgery and stays in for at least 7 to 10 days to help stay on top of the pain
0 comments | Login to leave a comment -
A general update
18 June 2023A little update, 5 days ago Jaimee had a comprehensive consultation and functional ultrasound with Professor Thomas Scholbach. His expertise, skill and knowledge were mind blowing and we learnt so much about what is happening to Jaimees body. There's alot to process and feels very overwhelming with a mix of emotions. Quite devastating news but, the relief, it's really hard to put into words the emotions we felt.
Her compressions are severe. Her duodenum (first part of the small bowel) is not only compressed but is not functioning. The Professor kept saying, ohh this is terrible.
We arrived in Düsseldorf 4 days ago, meet Professor Sandmann the vascular surgeon.
She then had her appointment with the gastroenterologist at the university hospital and had her endoscopy the following day. Unfortunately he couldnt find the source of the bleed.
A central line in her neck was placed 3 days ago and she has been receiving infusions for dehydration and finially receiving IV nutrition
The photo is with Professor Scholmann with the gong of hope.
0 comments | Login to leave a comment -
Radio interview
12 June 2023Last week I had the opportunity to raise some awareness about EDS and AVCS while sharing Jaimees story. I had an interview with Radio Hawke's Bay and with HB Today newspaper.
If anyone is interested in listening to the interview, just click the link below.
0 comments | Login to leave a comment -
Arrived in Leipzig
11 June 2023We arrived safely in Leipzig. The taxi ride to Adina Apartment Hotel was really fast, 150km/hr on the motorway. The time at the moment is 3am Sunday 11th June. We went for a little walk, had a look in the Promenade Central Station for something to eat. I was too tired to try and translate anything so ended up ordering a pizza
0 comments | Login to leave a comment -
Nearly there
11 June 2023Three flights done, one to go. Jaimee had quite a bad tachycardic episode on the flight from Akl to LA, vomited several times and brought up about 400mls of blood. Managed a little sleep.
LA to Munich even more blood on this flight and pain was hard to deal with but Jaimee did manage to sleep more on this flight. Very supportive air hostess, looked after her extremely well. Now waiting to board our last flight from Munich to Leipzig
0 comments | Login to leave a comment -
On our way
9 June 2023We are finally on our way. Jaimee slept on the flight from Napier to Auckland. Our flight leaves Auckland in 4 hours.
Again I just want to say how much we appreciate your kindness and generosity, from friends, from family and from people we don't know. We are truly grateful
0 comments | Login to leave a comment -
Facebook page
5 June 2023I have just created a Facebook page 'Jaimee's Complex Medical Journey' to start documenting and sharing Jaimee 's health journey. I'm hoping too that it will help raise awareness about Ehlers-Danlos syndrome (EDS) and abdominal vascular compressions which can develop from having EDS. Jaimee has been chronically ill for 5 years. It started with vomiting blood to now needing critical life saving surgery and treatment in Germany for abdominal vascular compressions.
Please feel free to follow.
https://www.facebook.com/profile.php?id=100092205140928&mibextid=ZbWKwL
Thank you
0 comments | Login to leave a comment -
IV fluids
3 June 2023After 2 weeks of trying to get an IV line in, we had success yesterday and Jaimee finally received some fluids. Unfortunately when she woke this morning her whole arm was swollen and the line bleeding so it had to be removed. Back on Tuesday for another go.
Just 7 days left and we'll be on our way to Germany. Please keep sharing
0 comments | Login to leave a comment -
Thank you
3 June 2023I just want to say I'm blown away by the kindness and generosity of you all. Jaimee and I truly appreciate it.
0 comments | Login to leave a comment -
Preparing
31 May 2023We leave for Germany in 10 days. Pretty much have everything organised. Jaimee continues to deteriorate with relentless vomiting, exhaustion and pain. The vomiting of blood has also increased over the last few weeks. Trying to keep her hydrated has been near impossible due to not being able to access a vein for an IV line.
0 comments | Login to leave a comment
